May 12, 2009

Heard of Fibromyalgia?

I'm interested in fibromyalgia because I keep running into survivors who have it. It seems to be right up there with IBS (irritable bowel syndrome) and migraines--which I suffer with--as survivor health issues that there are no cures for.

Today is National Fibromyalgia Awareness Day, so I thought I'd talk about it here. The first person I ever met with fibromyalgia was a roommate I had during one of my hospital stints. She was in so much pain that I felt like I should never complain about my IBS or migraines again. Her pain was pervasive and she had had many tests before her diagnosis.

Many of us are aware that fibromyalgia involves widespread pain and fatigue. But there are some common myths around the condition. The Mayo Clinic website has a helpful article that busts nine common myths about fibromyalgia. I have summarized the first six below.

Myth: Most doctors don't believe fybromyalgia is a real condition. Truth: Fibromyalgia is defined by a list of symptoms and most doctors believe these symptoms are real.

Myth: Fibromyalgia damages your joints. Truth: While the pain of fibromyalgia may be severe, it does not damage your muscles, joints or bones.

Myth: You look fine so there's nothing wrong with you. Truth: Friends, family and co-workers may hold this belief because they don't understand. Be willing to talk about it. Raise awareness.

Myth: You got the fibromyalgia diagnosis because your doctor couldn't find anything wrong with you. Truth: Fibromyalgia is a specific diagnosis based on a specific set of criteria devleoped by The American College of Rheumatology. But, diagnosing fibromyalgia can take time because there's no single test that can confirm you have it.

Myth: Fibromyalgia only causes pain. Truth:People with fibromyalgia also often experience fatigue and difficulty sleeping, headaches, sensitivity to light, dizziness, memory problems, and numbness and tingling in the arms and legs. IBS, bladder control problems and mood disorders often accompany fibromyalgia.

Myth: It's no use going to the doctor because no treatments for the condition exist. Truth:There's no standard treatment for it, but the FDA has now approved one drug for treating fibromyalgia and there are many options for controlling the pain, including medications, lifestyle changes, and alternative treatments.

I have fibromyalgia. Mine is comparatively mild--my pain level is pretty well a constant 2-3 on the pain scale. Sometimes it will range to a 4 or 5. The thing that I find is that the chronic low grade pain causes me to fatigue easily. I've often been accused of being lazy because of this.I also have IBS.I used to go to a chiropractor and get massage but I can't afford to any more.

Wow, this is great. I have Fibro (2 1/2 yrs), am a victim of sexual molestation and never thought about that being a contributing factor...hmmmm... (one time, in the family when I was 19), I'm 30, live in Chicagoland, and look forward to coming back to read more posts. Thanks for the helpful insights!

I can't help but wonder at physical problems which often go hand in hand with trauma. I think that our body stores our stress and memories and the pain is often the physical manifestation and natural result of all that we have gone through and are going through. and it can be so frustrating while trying to work on ourselves to have to deal with these physical problems too. but i think it is all connected.

thank you so much for shedding greater light on this particular diagnosis. especially helping to dispel the myth that it's not real. safe hugs!

What a great topic to cover! As I slipped into the black PTSD hole I, too, ended up bedridden with fibromyalgia - and IBS, CFS and a slew of other undiagnosable, 'incurable' organ dysfunctions.

It's very important for survivors to know how our minds can afffect our bodies this way because, unfortunately, the medical community doesn't get it! I saw numerous medical professionals and was on my way to the Mayo Clinic for a liver biopsy before I myself came across info on how PTSD can cause these kinds of underlying issues.

The good news is: when we heal our PTSD these problems heal, too. When I took back the power trauma stripped me of my body no longer needed to act out to get my attention. The debilitating fibro, CFS, bone, stomach, intestinal and liver problems that had persisted for 10 years disappeared as my mental state improved.

Now, how can we educate the medical community about this??? I had classic PTSD. If someone had just recognized the symptoms or asked me the right question I would have been healed so much sooner!

Thank you for your story. It has given me some ideas to what for so long doctors have told me is in my head I have had so many silly diagnoses from growing pains to my current one of artritis. I am 31 and have problem since I was ten. I also am a strong believer in some of what an author Louise Hay says about how states of mind can effect your physical being. I looked up what she says about fibromyalgia and she says it manefests fear and IBS is from not letting some thing go and migranes are often to do with sexual fears. Some people do nt believe in what she says but there to me seems to be a link with what we all have suffered. Thanks for helping me see from what angle my probems were coming from.

I know about the specific list of symptoms because I had it thrown at me repeatedly. I never fit enough of the criteria, though. Oddly enough, though, my IBS went away of its own accord, and my migraines and neuralgia went away with the bipolar meds. I won't complain. People too often don't seem to take fibromyalgia seriously though.

I remember being referred patients from several physicians for "stress related" symptoms. Their doctors said there was nothing medical causing their pain. But each one reported similar symptoms, similar issues and were not, imo, stressed psychologically. In time, we found an infectious disease and immunologists to work with. Lo and behold years later FM makes the grade as a real illness.

I always thing it is so important for a person to trust his or her own instincts when it comes to mind body and soul. And to find professionals that think along the same lines.

Hi! I only found you today. My therapist just left and we turned the talk from the bad r/s I just left to My Childhood (*screams*) and it appears the current grief is all about past buried trauma.

I had Fibro (we called it ME/Chronic Fatigue Syndrome) for 5 years and was bedridden. I always believed it was my soul calling for help, and now this latest r/s was my heartfinally calling for healing after 40 years.

I shall continue to read. Much love from my little girl inside to yours.

About Me

My background is in advertising and corporate communications, then freelance writing for Chicago newspapers. After moving to Colorado, I'm now writing, advocating and working on my certificate in botanical illustration.